By Tes Smith, social care programme manager at Macmillan Cancer Support
What does the term ‘progressive illness’ actually mean? And how does it differ from a ‘long-term illness’ or ‘life-changing illness’? There are so many different terms bandied about it can be confusing enough for health and social care professionals, let alone individuals.
Having a progressive illness essentially means that someone has an illness that is not curable and that they are progressing towards the end of their life.
It does not matter how old you are, or what your background is, being told you are nearing the end of your life can be a very frightening and daunting experience. The initial shock and disbelief is often replaced by powerful and overwhelming emotions. Elizabeth Kübler-Ross spoke of the five stages of bereavement – and these too are often identifiable pre-bereavement for individuals and their families.
Denial, bargaining, anger, acceptance, loss
People may experience denial, bargaining, anger in differing degrees, some may achieve a level of acceptance and all will experience loss – loss of control, physically and practically, loss of relationships and loss of a life ahead to look forward to.
Each person will respond differently and will need differing levels of psychological support to help them cope with their own thoughts and emotions.
There will also be practical issues that will need attending to such as finances, wills and power of attorney arrangements if needed. In addition, the individual may need to draw up plans for those that depend on them such as children, aged parents or pets.
As for medical care, the person with the progressive illness should be encouraged and supported to complete an advance care plan that clearly states their wishes for care and support and ultimately their preferred place to die. This would mean those close to them and professionals know exactly how they wish to be supported as they approach the end of their life.
Vital role for social workers
Social workers, and other social care professionals, have a vital role to play in all of these areas, alongside health colleagues. The really important aspects are around developing good communication systems between the services that are supporting the individual. Completing joint assessments and care planning visits can help to make sure information and plans are shared. Ensuring the professionals, the individual and carer know who to call when they need additional help is also important.
It is often that people living with cancer and their carers need time to ask questions and be given pertinent information and advice. This is not a specific health or social care task – it should be that the professionals there at the time are able to assist with this or can refer to further appropriate support.
End-of-life care is clearly a complex and diverse area. Currently we know that carers and health professionals supporting people at the end of life struggle to achieve joined-up, seamless services and care, and often do not receive the social work and social care support they need. This must change in order for people to receive the support they need and for them to actualise their advance care plan.
That’s why Macmillan is campaigning for social care to be free for people at the end-of-life. Having access to social care would help people to remain in their own homes if that is what they want. We all have a responsibility to get this right. A person approaching the end of their life is not a ‘health event’ or a ‘social care issue’. They will need the right support at the right time and we all have a duty to make that happen.